Watch now: Ependymoma Awareness Day, plus read the latest outreach report
Watch now: Ependymoma Awareness Day, plus read the latest outreach report
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Watch the 2022 Ependymoma Awareness Day Virtual Program

Image. An overlay from images of the program - a butterfly, speaker, and symbols of hope.
The CERN Foundation and the National Brain Tumor Society commemorated the 2022 Ependymoma Awareness Day during Brain Tumor Awareness Month! Ependymoma Awareness Day was held on May 10 to represent the 10 different molecular groups of ependymoma and to bring attention to the diversity of the disease. Hundreds of butterflies were released to honor loved ones with ependymoma, recognize caregivers, and support ependymoma research. The delicate and beautiful butterfly represents the spirit of the ependymoma community as a symbol of hope through change. The butterfly release was photographed and videotaped so that supporters around the world can participate and share in this moving event. View the butterfly release photo gallery.
The virtual program started with three ependymoma community members reading excerpts from books they have each written. These moving accounts are personal insights into what it is like to be diagnosed with or be the parent of a child with ependymoma. The next portion of the program featured footage from the Brain Tumor Awareness Month Butterfly Release Ceremony in Bethesda, MD. This event was held in connection to the Race for Hope-DC and Head to the Hill, NBTS’s flagship advocacy event. Brain and spinal cord community members involved included medical professionals, advocates, patients, and care partners.

Ependymoma Awareness Outreach

On a local level, the ependymoma community engaged in activities to create awareness about ependymoma where they live. In a groundswell of international support, patients, care partners, professionals, and advocates participated in a variety of events marking May 10, 2022, as Ependymoma Awareness Day. Activities included a book launch, spreading awareness through social media, a proclamation signing by Kansas Governor Laura Kelly, and more!
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With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma. Under “Direct My Gift to Support,” remember to select the Ependymoma Research and Education Fund.
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The CERN Foundation and the National Brain Tumor Society have joined forces to help people with ependymoma and advance ependymoma research toward the development of new and better treatments through the creation of the Ependymoma Fund for Research and Education. Today, the CERN Foundation is officially a designated program of the National Brain Tumor Society. Donations to the Ependymoma Fund for Research and Education will be made on the NBTS website and used to support research efforts that will benefit both ependymoma patients and research through CERN. Emphasis will be placed on CERN’s historical model of supporting work that translates basic science into clinical practice. The Fund will also address overcoming barriers to clinical trial accrual and the development of new clinical studies for ependymoma patients. Additional funds will be used to support educational efforts through print, media, and awareness events. The new collaborative Ependymoma Fund will continue CERN’s practice and tradition of involving and collaborating with other scientists, medical providers, foundations and supporters of ependymoma research.
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